Sunday, March 18, 2007

Coming Full Circle

He comes home from school every day and we have this little routine. Little Cat is waiting by the door for him to come in. I wonder sometimes why Little Cat does it. Yes, he comes around when I get home but not always. But for Dear Son, he waits by the door for him to come in, as if he knows. Dear Son smiles the minute he sees his kitty and once we’re inside, we take off his coat and work on getting into the rocker, his favorite thing.

It’s hard sometimes, as he’s winding down. There aren’t too many things left he can do; the rocker is one of them. I take the wheelchair over near the rocker and tilt it all the way forward until the foot rests hit the ground, while he is strapped in the chair. Once that is done, I go to the front and remove the foot rests entirely until his feet touch the ground. His feet will do nothing more than touch the ground. They don’t support his body any longer and there isn’t much tone. The legs are mere appendages, almost as if a decoration on his body, since they have long outlived the function. I maneuver my arms underneath his to dead lift him, holding him close to my body for maximum support and then spin him around real quick to the rocker which is facing the wheelchair, with minimum distance between the two. He doesn’t have any strength in his legs at this point, to help me even briefly for the exchange.

Once in the rocker, the ritual begins. We usually talk about his day, but his eyes are on the cat. I sit to his right in the upholstered chair and to my right is his wheelchair, which is now empty. He watches the cat as he climbs up onto his chair smelling every bit of Dear Son’s essence. The cat then settles down sitting on his arm rest, purring all the way. As the purring gets louder, I hit the “mute” button on the television and Dear Son’s ears are filled with the purring of the cat. He loves to listen to him purr and I tell him that purring are a kitty’s way of saying, “I love you”. He smiles and rocks even faster. Sometimes we listen for the ducks that eat the birdseed out on the patio. Dear Son’s ears take it all in. I switch back to the television and let him rock until his body can take no more, then do the transition once again with the wheelchair next to his feet for his legs that no longer work. Once he’s done with the rocker, we move to his bed for his after school nap.

The day takes a lot out of him. School, the bus ride home and finally the rocker, like the icing on the cake. He’ll sleep until dinner, if you want to call it that. I am still not sure that I’d call two cans of Pedia Sure and a can of water through the g tube dinner, but whatever. I still deeply miss cooking him dinner and seeing his face smash into the food, his sign to me to hurry it up and get the food in faster. He loved eating supper and I remember so much how he loved my home cooking, so much in fact, he refused any other food they made in the classroom or any food that they would have on their community outings. What mother wouldn’t love that? That was just the way he was.

He wakes up in the morning, happy and smiling every day. He always has. I think of every day as a gift. I am thankful getting to spend another day with him. My days are full, taking care of him. It’s really a lot sometimes, giving the meds four times a day, ordering meds, ordering supplies, the doctor appointments, getting him dressed, physically lifting him and just about everything else. I try to have some balance in my life but when you take care of a child like him, your eggs are always in one basket. And therein lies the problem.

He goes to his father’s house, one night every other weekend. It’s nice to have a break, to be able to go to bed whenever and not have to get the midnight meds, to not have to get up in the middle of the night to change him, to reposition him, or to get up at four in the morning to start his g tube feeding so he’ll be done in time for school. But on the other hand, it’s pretty lonely. I almost always hate those nights. I don’t hear him breathing in the other room and sometimes, I can’t get to sleep because it’s just too quiet. I don’t see his beautiful face when I get up in the morning and it always makes me wonder what on earth I am going to do when he’s gone.

The CD plays in the background and the song comes on called,”How Could An Angel Break My Heart?” It’s one of my favorite songs and I often think it’s how I’ll feel when Dear Son passes, with the words changed of course. Dear Son took my heart the day he was born. I doubt that will ever change. I wish sometimes, that it didn’t have to be an all or nothing with him. You invest your life so fully with these children and yet, it’s never enough. There are never enough minutes in a day to suck it all in.

I wonder when and how it will all end. Will I wake up one day and he’ll be gone? And what will I do when I have to get up in the morning and there is no one to greet me with a big smile and those beautiful eyes that lock into mine? And what will I do when I don’t have his beautiful face to kiss? I think back to those early years when he was born and I wondered how I was going to live with his disabilities and what it would mean. I thought back to all of the things that I thought I would be missing out, that he would be missing out on and how it wasn’t fair and how I wished it was different. None of those things ever really mattered. In the end, my joy as a mother was never about what he “could do” or what he “couldn’t do” but about who he is.

We are on our way back from the longest and hardest walk of our lives. I spent a lot of time wishing we were on the other path. While we may have started in the forest, we gradually made our way to the other side, with the sun dappling through the leaves on our way and finally into the open where the sunshine beams bright. The sun will set soon. And when the sun finally sets, I’ll kiss him one last time and know that he is finally at peace. A new song will start playing in my soul called, “Un-Break My Heart” … and it will be a long time until the sun will rise again.


Heather said...

Your words touch me...always. Sounds like there is such comfort in your daily routines together. I'm on a reflux board and several whose kids are tube fed have been able to receive pureed/blenderized diets through their tubes. Not quite the same level of enjoyment for Dear Son, but perhaps a different way to nourish him than the Pediasure.

Summer said...

Darn...I just lost a really long heartfelt post to you.

Here's the short version.

I love coming here every week and learning more about you and your Dear Son.

You always move me. You've also changed my views of the significantly disabled.

My own Dear Daughter has Ataxic CP. I've spent a long time coming to terms with our own road.

No mother should have to walk the road you are on. Yet I see how lucky you are to have your Dear Son and what a gift each day is. He's lucky to have you two.

You both are remarkable people.

Thank you for sharing.

jennifer said...

I love your love for Dear Son.
It will never go away; the love we have will never leave us.

Anne K. said...

Thank you for touching us, as always - especially today. I ache for you, yet admire the depth and totality of the pure love you and your son share.

Michelle said...

oh DM, I know we are strangers. But my heart aches to just give you a hug tonight. A dear friend of mine lost a 10 yr old son recently to Spinal Muscular Atrophy. He couldn't hold his head up, he was just like a rag doll. It was so hard for her, lifting him, caring for him. I always wondered how on earth she would be able to do it when he grew to be a teen. He never did. She tells me that her nights are very strange now, and that as tired as she was, it was a lovely kind of tired. She misses the sounds of her boy, too. Your poost reminded me of her, and of him. If Dear Son is anything like Colby, he has this magic way of grabbing your heart and making you see his world and not at all seeing it as less than. I wish I could say "dont be silly", everything will be ok. But you and I both know that sometimes it just is what it is. And you are right, that journey you are on is just as beautiful and powerful as it might have been on the other path. And it is obvious that you wouldnt trade the life you have had with him for anything. Thanks for AGAIN sending me to bed grateful. I hope you sleep well tonight, and that you feel the prayers of a thousand cyber-angels around you.

Dream Mom said...

Thanks, everyone. Summer- Your comment was still nice but I know how frustrating it can be to lose a post. I like what you said about changing your views on the significantly disabled. I remember growing up and being afraid when I would see someone like that. Now, I say hello to them. Michelle-Thanks for sharing the story about your friend. I know exactly what she means about a lovely kind of tired and about missing the sound of him. I love what you said about the journey: "that the journey you are on is just as beautiful and powerful as it might have been on the other path." It's so true and that is something that I wish I would have known, and that all mothers of special needs children should know, up front. I wonder if having that perspective first, instead of fear, would make their children's live better.

Anonymous said...

Oh how this post touched my heart...and how close to home it is. You expressed exactly my same thoughts when my son Christopher was at the last stage of his beautiful life. This was 1996 and he was 22 months old. He had been hospitalized for pneumonia but it had taken a toll on his already compromised respiratory system-we knew this was it and as our dr. said "Christopher needs to go home, to die in peace".

Chrissy would have never walked, was fed through a g-tube, but my oh my, those eyes! He told me everything through them and I still can see them to this day. When he was at the end, so tired, so lethargic, Thurs. July 11th, I held my sweet boy and told him "it's OK, you can go to sleep now, mommy will be alright". He looked me straight in the eyes, and slipped away peacefully - as I so badly prayed for him, for it to be gentle.

My life had been completely consumed with his needs and making sure everything,and I mean everything, was as perfect as possible for him. When he left, I didn't know what to do with myself. My world as I knew it was gone. They talk about empty arms syndrome - that's what I felt, like I could still feel him in my arms, but he was gone.

When you love someone like I did/do my son, and you do your DS, life's perspective and priorties change dramatically. Would we have chosen this path - probably not, but never in a million years would I trade my almost two years with Christopher. It was a terrifying feeling being without him, but almost 11 years later, the love for him is still there, I still miss him terribly, but it's a sweet feeling now. He enriched my life more than I can ever put into words.

Thank you for letting me remember him here - your DS makes me feel close to Christopher. You inspire me beyond words and I hope I didn't overstep myself by posting my "novel" here.

All my best,

Jamie from Portland Oregon

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